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Thursday, 24 January 2019

Tonia has had a difficult time in the UK for the last few months. Her treatment has not been up to scratch unfortunately but, despite many setbacks, Tonia is a determined young lady and is fighting her corner to get well and to get the treatment she needs in the UK.

Unfortunately, Tonia will need another operation. We knew this was likely at the time of the last operation but it has recently been confirmed by a specialist in the UK. The operation, like last time, is not performed in the UK. This means that Tonia needs to raise the finance to be able to go back to the Teknon clinic in Barcelona, Spain.

At the time of writing, we've reached £120,516 which is amazing. However, we need to get to £200,000 to cover the additional costs of surgery and rehab. So that's just £79,500 we need to raise in the next few months. We know it's a huge ask. And we know that Tonia isn't the only one who needs private health care. And we know she's not the only one suffering with these serious health conditions due to EDS (Ehlers Danlos Syndrome).

If you care to donate, you can do that here on Tonia's Justgiving page. All funds are raised via the charity Just4Children, who then pay the medical fees out of the monies raised.

To read up more about Tonia's progress, her Mum, Victoria, is posting regular updates from her Facebook page here.

Tonia made it back to the UK a few weeks ago in dramatic fashion involving her ambulance breaking down and being written off, a trip to hospital in the South of France and heroic efforts from Tim the paramedic to get everyone home safely from the South of France. The good news is that they made it.

Tonia was making great progress post-operation and was regaining her vision and her strength, was able to sit up, and was working hard on her physiotherapy to regain mobility.

Unfortunately, back at home, things are not looking so good. The pain medication and nutrition needed was not administered by her local hospital. Trust between the patient and hospital has broken down (following years of to-ing and fro-ing over Tonia's complex case) and relations are now sadly at an all time low.

Without this medication and nutrition, Tonia's health has worsened once more leading to seizures, sepsis and pneumonia. As a last resort, Victoria, Tonia's Mum, took her to the John Radcliffe Hospital in Oxford in the hope of getting better treatment and to find a medical team willing to follow the care plan set out in Barcelona. These needs are now being partially met but Tonia is still very unwell and in hospital.

EDS is a complicated illness and there is a lack of knowledge about it in the NHS. Research into the illness is also underfunded and the EDS Society's resources are stretched. As a result, this means that some NHS Trusts don't have the resources, support or experience to deal with patients who have EDS and related chronic illnesses and people fall through the net.

But we are not losing hope. There are still things we can do...

We are still fundraising for a new ambulance and for more medical costs:

We are hoping and praying that Tonia recovers from her current bout of sepsis and pneumonia, and that when she's a bit stronger, can return to Barcelona for more treatment and potentially, another operation. There are also still bills to pay from her recent trip. You can donate here.

The Just4Children campaign doesn't cover Tonia's needs in the UK so we can't use those funds to convert a second-hand ambulance for her needs. As such, we have a separate campaign for that which you can donate to here.

We have an online petition going to request that the medical professionals looking after Tonia in the UK, follow the care plan from Barcelona and administer the medications and nutrition required. Please sign it and share as far and wide as you can. You can do that here.

Find out more about the event over on Facebook. The King's Quartet are playing between 1.30 and 2.45pm. There are lots of other lovely activities going on in the park all afternoon as well. Hope to see you there!

By setting up a raffle of donated artwork, of course, to go towards the funds for her daughter's return to the UK!
The raffle started a couple of days ago on Victoria's birthday on the 17th of July and will run for 10 days and will be drawn on 27th July 2018 using a random number generator.

The raffle is running using a small lotteries licence purchased specifically for Tonia's Journey fundraising and is valid in the UK only. We've successfully used this method before.

The trees and hill are 'Autumnal View across to Roseberry Topping, Cleveland' (photographer: Joe Cornish).

Autumnul View Across to Roseberry Topping, Cleveland. Joe Cornish.

The road through the trees is Bridge of Balgie, Glenlyon (photographer: Jason O'Flynn)

Bridge of Balgie, Glenlyon. Jason O'Flynn.

The final piece of art is called "Traveller’s Joy" and is a beautiful oil painting of a Clematis (common name Traveller’s Joy). This has been donated by artist Victoria Edwards of Fugly Manor Art and is hand signed. It is mounted in a contemporary black frame.

Traveller's Joy. Victoria Edwards.

How do I buy a ticket?

This bit is straightforward. Each ticket is £2. Simply make a donation on this page. When you make your donation, please make sure you include your name and contact details and which picture/s you'd like your tickets against. Winners will be contacted and also announced via Twitter and Facebook.Why is Victoria doing this?

Victoria's daughter, Tonia, has completed her first tranche of surgery in Barcelona and has started her rehabilitation. She now needs to get home to Eckington. Tim, the volunteer paramedic and Sandra, a volunteer nurse are flying out this week to Barcelona to prepare the ambulance for the road journey. The team will then drive back to Eckington.
This raffle is to fund the costs of this leg of Tonia's Journey.

Please do buy a ticket. We still have a long way to go to cover Tonia's medical costs.

Tuesday, 17 July 2018

As you're probably aware, we still have some way to go with our fundraising efforts for Tonia. That means, we're setting up a new raffle: 'The Grand Draw', to help us reach our goal.

What is it?

The Grand Draw is an offline raffle where we'll be selling tickets in the Three Counties Area.

What are the prizes?

That's down to you! We're actively seeking a few STAR prizes from local businesses who would like to support us in our fundraising efforts. All businesses who donate prizes will benefit from substantial online promotion via social media, namely Twitter, Facebook and LinkedIn, from our #TeamTonia social media army. You'll also be included on the printed tickets and will get some love and attention on our blog.

What kind of things are we after?

That's really up to you. We're open to ideas. The prizes need to be suitable for a general consumer audience. Food or beauty hampers always go down well. Vouchers for well known stores are ever popular. Entertainment experiences are great, as are meals out in local restaurants, weekends away in a lovely B&B or hotel or even a family holiday. Mobile handsets, computers, tablets, TVs and other gadgets are also a big hit for raffles.

When will the raffle start?

We want to go to print with our tickets as soon as possible and we can do that as soon as we have secured a few more prizes.

When will the raffle end?

The raffle is currently timed to end at the end of August, however this may change depending on how long it takes us to secure the prizes.

Today it is Tonia's Mum's Birthday and #TeamTonia are sending love and best wishes to her. However, the celebrations, if they are to happen at all, will have to wait. You see, later this week Tonia will be returning from Barcelona, driven in the ambulance that got her there, under the careful stewardship of three guardian angels: namely her mum Victoria and two volunteer paramedics, Tim and Sandra (pictured here with Tonia).

The journey out to Barcelona on the May Bank Holiday took a gruelling 34 hours. The paramedics, Tim and Sandra, flew back home whilst Tonia received her treatment from Dr Gilete and his team. Now they fly out again on the 18th and 19th in preparation for the return journey.

These good people use their skills and professions and service to benefit others. Yet, despite appeals to the airlines for free or discounted flights for our guardian angels, no airline has been forthcoming and so flights have had to be purchased. Additionally, for the journey - train fares, Channel Tunnel, toll fees and the cost of fuel needs to be met.

For this element alone £1,600 needs to be found. This adds to our outstanding fundraising bill of at least another £57,000 for further surgery, medication and rehabilitation costs not funded by the NHS.

Where does this money come from? It comes from a combination of live events, raffles and online donations from kind donors like you.

Can you help us? Every single £1 counts.

TEXT giving is a great and easy route to supporting Tonia if you are in the UK: TEXT EHLE82£1 or EHLE82£5 or EHLE82£10 to 70070

Suffice to say, the urgent pressure on fundraising is immense.
Thank you to everyone for your continued support, whether through contributions in cash, kind or through sharing or lobbying. Keep up the good work!

Monday, 16 July 2018

Sarah, Henri and Graeme from #TeamTonia had a fab day at Eckstock last weekend. They were blessed with glorious sunshine, a great view of the stage and a wonderful tombola and lucky dip.
They raised just shy of £400 on the day which is a great boost to our fundraising efforts. Well done!

And whether you were there or not, this official video is rather lovely and captures the spirit brilliantly. Music by Hollow Coves.

Feeling generous? Then please donate here. We still have a long way to go to support Tonia on her journey. And see you at Eckstock next year. With a bit of luck and a lot of rehabiliation, we're hopeful that Tonia will be able to join us in 2019.

Friday, 29 June 2018

Eckstock is Eckington's very own annual music festival held on the Eckington Recreation ground. Featuring local bands and entertainment for all the family, and plenty of food and drink to choose from. #TeamTonia will be there too with our own stall where you'll find a Tombola and Lucky Dip with lots of treats on offer for all ages with all proceeds going towards Tonia's ongoing medical costs.

Eckstock starts at midday on Saturday 14 July and it's just £7.50 entry fee. Find out more on their Facebook page or on their website. All welcome - you don't have to be a villager to attend!

If you have Tombola or Lucky Dip prizes to donate, please get in touch with Sarah by email so she can arrange delivery or collection.

Tuesday, 26 June 2018

Conscious Crafties is a wonderful website, marketplace and community for people suffering from illnesses and disabilities and their carers. It's like Etsy, but the difference is that all the crafters are either disabled or caring for someone who is disabled. Not only that, but goods can be commissioned as well as having ready made items for sale. It's rather wonderful and well worth supporting.

We're very humbled that some of 'The Crafties' have kindly donated their items to help fundraise for Tonia and all proceeds are going towards Tonia's medical costs. Tonia herself is a very talented artist so this is right up our street! The shop is great for small gifts and cards and there are items suitable for friends and family alike.

Why not give it a whirl and support Tonia's Journey in the process? Here's the link.

Tweeters of Worcestershire and the Three Counties, this one is for you!

The #ToniasJourney #MeetWhoYouTweet social evening is for local tweeters from #WorcestershireHour #MalvernHillsHour #HerefordHour and other Three Counties ‘Twitter Hours’ to meet those you regularly tweet, in person, over a drink and a bite to eat.

This is both a networking and a charity event as we're fundraising to support a young Worcestershire woman – 21-year old Antonia Payne-Cheney, ‘Tonia’ from Eckington, near Pershore.
Through local media and social media you have probably heard Tonia’s story: she has an acute form of Ehlers-Danlos Syndrome, a rare connective tissue disorder, along with complex secondary complaints, and these have caused her brain stem to be compressed and to have further gastro-intestinal failure.

Diagnosed at the age of just 14 and now fed through a tube and bedridden, Tonia’s plight was the focus earlier this year of the programme ‘DIY SOS’ which saw the BBC team transform Tonia’s home and enable her to leave hospital after a three and a half years in a hospital bed.

Following an intense media and social media fundraising campaign, Tonia’s mother, Victoria Cheney, and a small support group, #TeamTonia, sourced sufficient funds and a voluntary paramedic team to get her to Barcelona for treatment, surgery and rehabilitation. We're through phase one (which was gruelling in itself), but now need to raise funds for Tonia's next stage of ‘Tethered Cord’ lower back surgery – to alleviate further debilitating symptoms – along with Tonia’s stay in ICU, other tests and rehabilitation.
In short – the need for funds is CRITICAL and the pressure on raising the funds is NOW. Without OUR help the next stage surgery will not proceed and the recent treatment will not fully suffice in alleviating Tonia’s symptoms.

Our event starts at 6pm with a welcome drink. Food will be served throughout the evening. You are welcome to drop in as and when you can, but the longer you are able to stay, the more tweeters you will get to meet and connect with.

Various fundraising activities will be happening on the evening including a raffle.

In support of Tonia and the condition ‘Ehlers-Danlos Syndrome’ we encourage you to wear anything stripey! The icon of EDS is a zebra – so ‘Show Us Your Stripes’ to help raise awareness of this debilitating condition.